Eden Lord
514 posts
Eden Lord
@emlord
CEO @tda4rare, @my_rare_id, Rare Disease Advocate "We need a National Emergency Treatment Database For Rare Disease Patients" https://t.co/xfGCioudts
Excited to officially welcome Cam to The Sisterhood! "Certainly, at Duke, we look for players with high academic goals, high academic standards. Cam is someone who fits perfectly, in terms of the type of person we're looking for." #TeamIMPACT
It’s an honor to have Cam as part of The Sisterhood. 🗣️ @delaneythomas21 #TeamIMPACT
One of the most agonizing parts about being a rare disease parent is all of the difficult medical decisions you have to make for your child, whether to get a specific procedure or not, with no guarantee of benefits. We are so scared of getting it wrong. #RareDiseaseTruth
The rare disease community is not diverse enough. We need to create a safe space to welcome more representation from further marginalized communities. I’m happy to represent but, let’s be honest, we’ve got a lot of white, cis, women. #RareDiseaseTruth
@NeenaNizar I'm just going throw it out there: the lack of masking - which is an issue even within our specific disease cmmty's group events - is a huge barrier for us. Respiratory viruses can be deadly for many rare patients, especially small children. They are def. a threat to our son.
Yes!!! The experience of having our everyday lives ripped apart by the unexpected is a free fall into a chasm of despair.. a steep decline, a constant swirling.. we experience all the facets that are part of grief — shock, disbelief, bewilderment.
@NeenaNizar As a small org that works to provide inclusive virtual & now (safe) hybrid events, one of the biggest challenges we face is the lack of word-of-mouth support. Our @24hoursofrare event highlights marginalized populations around the world & patients/caregivers attend free.
100% agree. It takes resources to attend #raredisease events, from 💰to ability to take off work to alternate care for family members, so perspectives of those lacking these resources are missing. These voices are left out of discussions to set policy priorities #RareDiseaseTruth
Do you have an update you'd like to share from your #raredisease community at our #RareDiseaseDay event? Join us for #24HoursOfRare2023, the only global event held in celebration of the rare disease community.